Got Lab Results, Could They Be Wrong?

[SuzieQ]

I got the results of my biopsies back today. They were negative for celiac disease. I am feeling kind of down right now. If I don't have celiac disease, why was my IgG to Gliadin high, and why do I feel so much better since eating gluten free? - not in a brain fog and not nearly as tired since I had the biopsy? Could this all be in my head?

I have lost an inch - in fluid I believe - off of my waist since going gluten free 5 days ago. I don't look as puffy in my face.

Could high IgG levels indicate that I'm just allergic to gluten?

I'm confused. Any help will be appreciated.

[penguin]

Well, either way, you feel better, right? That's a huge something, don't you think?

Also, the small intestine is ~22ft long, there may be damage further down the line that the endoscope missed.

Or, you might just be intolerant, which is about the same as Celiac, only without the damage. There are plenty of people on here that have had negative biopsies but have had tremendous improvement with the diet.

Other benefits of not having confirmed celiac:

*You don't have the huge risk of cancer if it goes untreated

*No trouble getting health insurance because of dx

*Probably won't pass it along to your children

"Smile, it increases your face value"

[plantime]

Did your doc do a visual exam, in which he actually looked at the lining through the scope, or did he just take random blind samples? If he took random blind samples, he could have missed patchy damage (like mine was). Or, as Chelse said, you could be intolerant, which does not cause damage, just illness. You could also be fortunate enough to have caught on before damage was bad enough to be seen. Or the lab could be not seeing minor damage to the very ends of the villi. At any rate, if being on the gluten-free diet makes you feel better and your symptoms go away, that itself is a positive test result. You don't need a doc's permission to eat gluten-free!

[SuzieQ]

Thanks you guys.

"Did your doc do a visual exam, in which he actually looked at the lining through the scope, or did he just take random blind samples?"

My doctor said he didn't see any damage, but the proof would be in the biopsies.

"Well, either way, you feel better, right? That's a huge something, don't you think?

Also, the small intestine is ~22ft long, there may be damage further down the line that the endoscope missed."

That is a huge something! I committed to remaining gluten free no matter how the biopsies came out, and I intend to. For me to take myself seriously and for people in my family to take me seriously, I needed to hear a positive diagnosis.

I agree with what you said about the length of my small intestine. The tube is only 5 ft. long that they use to do the procedure. I didn't expect him to look at all 22ft. because all of that winding could have been more likely to cause perforation, I think. It just makes me wonder if there parts of my intestine he couldn't get to that might have been damaged.

I had thought about eating wheat again and letting a dermatologist biopsy what I believe to be Dermatitis Herpetiformis, but I just don't want to go through all of that stomache pain again.

Sorry to ramble on.....

Thanks again.

[Rachel--24]

You did have a positive test result. You had a high IgG. May or may not be Celiac but either way it IS something. That and you're improvement on the diet says you're body is definately not liking gluten. I'd be happy with those results.

[Guest nini]

the positive blood test combined with positive dietary response is good enough... if the dr. didn't take enough samples, (recommended 6 to 8 samples MINIMUM) damage is easily missed. So, also, keep in mind the biopsy cannot rule it out by NOT finding damage... it can only rule it in if it's positive, but the margin for error in sampling and reading the biopsy results is too large...

stick to the diet and get on with being healthy. do you have celiac or gluten intolerance? doesn't matter, you still treat it the same way. Lifelong strict adherance to the gluten free diet.

[floridanative]

Every post above is dead on. You have a positive test by how your feel. I too lost inches in my waist when I stopped ingesting gluten. It was amazing. Plus the latest protocol on biopsies is that 6 to 8 samples are needed for correct result. My doc took two samples which is what most docs do. This way they are missing tons of Celiac dx's. Just say no to gluten and get on with your healthier life! Best of luck to you and trust me if I can do this (even if it's only a month for me) anyone can!

[SuzieQ]

Thanks all of you for the information and support. I am continuing to eat gluten free and I am still feeling sooooo much better. I will continue to eat gluten free - probably for life.

I don't know why, but I have this nagging need to know. I am trying to just let it go without a definitive diagnosis.

The main question I still have is this........

What other diseases are indicated by high IgG levels when the test was done specifically to Gliadin? Does this mean that I at a minimum that I am allergic to gluten? Is that what the IgG test means, or are there other serious disease possibilities here?

I can't get anyone at my doctor's office to call me back about this to discuss this with me. They have one nurse , and apparently she is the only one who can discuss this with me or ask the doctor about it, and she was on vacation last week. She came back yesterday, and was off this afternoon. Frankly, I am about to give up on them. I am extremely frustrated with them at this point.

I appreciate all of your feedback.

[tiredofdoctors]

The relief of the brain fog you could be feeling is that, AntiGliadin antibodies destroy perkinje cells -- which are located primarily in your brain. I am negative celiac -- neg Antitransglutaminase, antiendomysial, and negative small intestine biopsy. I do, however, have gluten ataxia -- and walk like the worst drunk you've ever seen. Can barely stand without falling. When I'm glutened, it's a guaranteed 3 day in bed, can't lift my head up off the pillow kind of thing. Don't be upset about the negative celiac, but if your antigliadin antibodies are elevated, it is an autoimmune response -- not an allergy -- your body is in attack mode. My recommendation: Stay off gluten, and if your symptoms continue, contact a (compassionate) neurologist. They're kind of hard to find, but when you find one, stick with him/her. I'm wishing you the best of luck . . . and prayers and ((hugs)) are going out to you. . . . Lynne

[TCA]

We did allergy tests on my daughter to eliminate that as a possibility. It was not difficult at all and she was only 8 mos. old. By ruling this out, we kinda ruled in Celiac. If you can find a good allergist, it might be something to try if you are so concerned about it. My son only had a high IgG and has had an amazingly positive response to the diet. Clinically he has it, but he had 2 negative biopsies. Go figure.... Either way, we're all gluten-free now!

[SuzieQ]

  tiredofdoctors!!! said:

The relief of the brain fog you could be feeling is that, AntiGliadin antibodies destroy perkinje cells -- which are located primarily in your brain. I am negative celiac -- neg Antitransglutaminase, antiendomysial, and negative small intestine biopsy. I do, however, have gluten ataxia -- and walk like the worst drunk you've ever seen. Can barely stand without falling. When I'm glutened, it's a guaranteed 3 day in bed, can't lift my head up off the pillow kind of thing. Don't be upset about the negative celiac, but if your antigliadin antibodies are elevated, it is an autoimmune response -- not an allergy -- your body is in attack mode. My recommendation: Stay off gluten, and if your symptoms continue, contact a (compassionate) neurologist. They're kind of hard to find, but when you find one, stick with him/her. I'm wishing you the best of luck . . . and prayers and ((hugs)) are going out to you. . . . Lynne

Thank you so much Lynne. I will look up gluten ataxia. I haven't heard of that before.

I contacted a distant cousin tonight who works in a hospital lab. She doesn't draw blood, she actually looks at things through the microscope. She shed some light on things for me. She said an IgG elevation indicated a past reaction to Gliadin. An elevated IgA would have been a present reaction. I am beginning to wonder if I messed up the blood tests and biopsies by going on and off of gluten.

For those who might can help me answer this question, I am putting a timeline below:

1/27/06- my doctor mentioned he thought I might have celiac disease. I came home and did some research and by the next day I was off gluten. He wanted to run blood tests when I came in for my physical in April, but after reading about it, I asked him to go ahead and run them.

1/30/06- Began eating gluten again because I was having the blood test the next day

1/31/06- I had blood drawn. Results were IgA "normal" IgG - 43.

Stopped eating gluten the day the blood was drawn.

2/07/06- Got results of blood test, doctor referred me to gastroenterologist. Endoscopy scheduled for 2/21.

2/09/06- Began eating gluten again to prepare for endoscopy. I was feeling so bad after reintroducing gluten, that I called for an earlier appt. and got one for 2/16/06.

2/16/06 - Date of biopsy - results negative, but have been gluten free ever since.

Is it possible that I messed my tests up with all of the going on and off gluten I was doing? If I had only known then what I have read on this board, I would have just stayed on gluten until the endoscopy. I believe it was harder getting off and going back on it. The symptoms were so much worse that way.

Thanks for all of your help and support. It means a lot as I try to sort this stuff out.

[aikiducky]

The time you were off gluten was so short that I seriously doubt it had an effect on the test results. There are a couple of other possibilities though: 1. you could be in the beginning stages of intestinal damage, when it doesn't yet show on blood tests of biopsies 2. you're gluten intolerant but not celiac, which means you might have horrible symptoms but maybe never develop serious intestinal damage. In both cases the solution is the same, if gluten makes you feel sick, stay off gluten.

Pauliina

[penguin]

The IgG was the only one I had elevated...is there any other reason anyone knows of that you might have an elevated IgG with everything else normal?

[water-nymph]

ChelsE and SuzieQ -

I too have just the elevated IgG. My regular doc and the allergist are at odds to whether it is Celiac. It seems that in a small amount of the population, an elevated IgG can exist and not really be related to any conditions. It's either Celiac, or, I guess, idiopathic. That's what they both said...

My allergist said that so long as there's a positive response to the dietary change, might as well stick with it. People go vegan and vegetarian and dairy-free for so many reasons.. Being wheat free, because of a disease OR because it makes you feel better, just makes sense.

[Lollie]

I have to agree with everybody! But let me state for the record, I didn't get a positive on any of the tests, although I don't really know what the levels should or shouldn't be.....my doc won't call me back.

But my point is, if you feel incredible better, that's your result. I was having all the GI symptoms, horrible bad pain, for ten years. The diet has changed that. I felt like you too, though. There is a nagging in the back of my head that says if your not testing positive for celiac then what is it. I try to make that part of my brain shut up because I don't feel like I had for 10 years, I actually feel good most of the time now. Huge improvment!

I also get what your saying about if you had a Dx it would be easier in family situations. I have had alot of greif from my family about this. I now reply to anyone who quetions my choices for food, like this, Why does what I eat effect you so much. I don't worry about what others are eating, they shouldn't worry about what I eat. The end.

Good luck, I hope that you are able to get some peace.

Lollie